On the Palette
Brilliant Purple: Although Ben had some significant seizure activity throughout this morning's early hours he (and we) seem to be coping with them a little more confidently. I brought him into our bed for a change which gives us much more room to stretch out. The problem is that Joan and I sort of "fight" over who gets to snuggle with Ben. Unlike Jessie who seems to practice her dance class maneuvers during her sleep, Ben curls up into a neat little ball of love and barely moves. It also seems to comfort him seeing a familiar face once the seizure is over.
Light Blue Permanent: Several of you commented about Ben's fat little feet seen in the video over the weekend. Yes, they are that adorable and soft! Part of the reason obviously has to do with the fact that can't walk on them. But I have to give more credit to my wife and the nurses for washing and messaging them with lotion every day. It's part of his daily routine but it is also hysterical at times because Ben is extremely ticklish! We'll make it a point to get some video soon of us rubbing his feet.
Emerald Green: Tonight's featured music is an icon of Americana music. Billy Joe Shaver is/was one of the secret "Outlaws" of country music. He's collaborated with Waylon, Willie, David Alan Coe, Johnny Cash, and has been covered by a world of other country and rock groups just now discovering his music. Be sure to give the songs "Live Forever" and Freedom's Child" a good long listen.
Now playing on the iPod: Billy Joe Shaver
Monday, February 19, 2007
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2 comments:
Question? Is Ben hooked up to a monitor at night to keep track of his seizures? Does he sleep in the same room as you? Just curious what a night is like with Ben compared to a night of the moosh falling out of her bed.
On a normal night it's probably not much different than yours. We have one of those baby monitors so we can hear him and that's about it. The first night he had the seizures he woke us up screaming.
Since then we've put him back on his Pulse-Sat monitor. It's a miniature version of that TV-looking monitor you see in hospitals. An alarm triggers if his pulse or O2 saturation levels reach outside preset parameters.
It can be aggrevating since we attach the probe to one of his toes. If he moves that foot around during the night we'll get false alarms.
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